Re: Re: Hi, I am a newcomer too.

[Guest guest]

I seemed to miss this e.mail when I was replying earlier to a post you had on

the board - sorry!

You sound so tired , I just know the feeling. Tired, dis-spirited and

worn down.....the life of a carer huh?!!

It's no wonder you don't feel noble, but you are doing your VERY best along with

a lot of other problems right now, we did the house build thing 8 years or so

ago now, it puts SUCH a lot of stress both physical and emotional on you WITHOUT

all your other asociated problems......give yourself a break, it's ok not to

feel noble......have a good cry.

Your also raising a young family and trying not to put their needs on the

back-burner, but just watch you don't burn yourself out either. There's this

MYTH out there that carers first need to take care of themselves before seeing

to the needs of others - all I can say to that is YEAH RIGHT..!! There's NEVER

any room for ourselves when you have Lewy Body to deal with.

The UTI thing though, I'd get that checked out - do you have any home nursing by

professionals? My dad suffered from urinary tract infections a lot and just

before we'd notice it his behaviour would change and his delerium would get

worse, I noticed you mentioned behaviour changes on the Friday/Saturday, just

wondering if this could be an infection? My dad also suffered from chest

infections pretty much constantly and again the agitated behaviour would sort of

preceed it - the infection taking a hold and giving him a temperature.....we got

used to the signs but only 'eventually'..!!

The bowel and bladder incontinence with my dad was a sporadic thing. In the

main he wasn't fully incontinent till he went into permanent care (3rd year

after diagnosis) his brain would give him the signal that he needed to go to the

bathroom but his neurological ability sometimes didn't quite get him there in

time. In fact bathroom issues at home were a nightmare, he'd get up to go so

often in the night, we'd struggle through his delerium to get him there, then he

either couldn't or wouldnt perform and there would be a struggle to get him back

to bed - only for it to start all over again a few minutes later.....very

exhausting.

I don't think there's a sequence for which part becomes incontinent first, I

think it's just sods law really. I think towards the end of my dads illness it

was the complete dependancy thing that saddened me the most. His nursing team

though were fantastic and that gave us SUCH peace of mind. I miss him terribly

and right now ACHE just to hear his voice or feel the touch of his hand.....1st

stage grief I suppose.

You WILL get through this , it takes its toll but you WILL get

through.......I notice your appointment is May, I really hope it is successful

and you get a proper diagnosis and treatment for your mother in law, she is a

very lucky lady to have you and your sister also helping out, not a lot of

people would do that for in-laws.

For now try to just cope with TODAY and then sleep.....hopefully you are

managing some rest although I know it's not really the restorative kind of rest

we get when we have to sleep with one ear open, also you have your kids

dependent on you.....but try to rest as much as you possibly can WHEN you can,

you have to apply the same rules here as to babies - when they sleep you sleep.

Good luck & all love from Scotland.

Kathleen.

Hi, I am a newcomer too.

>

>

>

> Am I glad to find you. My Mother-in-law has yet to be formally

> diagnosed with anything other than dementia. After readind

about

> LBD, I believe she has it. Two and a half years ago, we noticed

odd

> behaviours and memory lapses. Did not know how to open

Christmas

> present or even what was going on. Continually asked what she

got.

> She lived alone in Oshawa, ON. Jan. 04 she broke left hip and

had

> it replaced. Stayed with sister-in-law for 2 months after

> discharge. We later found out that MIL had been experiencing

> hallucinations, yet moved back to own home. Hallucinations

became

> severe so Family Dr. put her on respirdal (early June)with

> appointment to see psychiatrist, Dec 10. My husband went to get

her

> (we live outside borough)for appt. to find that she broke

other

> hip day before. She has never been the same since. Before

first

> break, she was down to 89 lbs from 118. No explanation other

than

> not well because of malnutrition. Sister-in-law POA and primary

> caregiver. No control over situation for us. Sister-in-law

passed

> away Dec. 10, her husband Dec 18, unrelated. MIL declining

every

> few days. She is only 68 now. Wears depends for a month now.

> Toilets on own with accidents, sometimes constant trips to

> bathroom. Lays in bed all day and night. Comes to table to

eat,

> starting to have difficulty swallowing. Needs complete care,

can't

> shower, brushes teeth after I put toothpaste on, and I tell her

to

> do so. Very unsteady on feet now. Difficult to get into bed,

can't

> swing legs in. Could not walk without walker. Hunched over

> posture, stoney face. Shaky. Speaks (mostly to say " ya " ) only

when

> spoken to. Does not look directly at us unless furtively.

Probably

> sometimes wonders who we are. Hallucinations becoming worse.

Dr's

> advice is to keep upping respirdal. Is this increasing motor

skill

> decrease more rapidly? We feel alone without good medical

advice.

> She will be seeing a gerantologist in May, but the trip will

cause

> her to become worse and the decline is so quick, she needs help

now

> to sort out med's. I feel like I am rambling. My husband and I

are

> plowing through this terrible disease with the overshadowing of

> wondering if it can have a genetic link. His grandmother

> had " dementia " in the 70's, both aunts are going through the

same

> thing as his mother now. We have two boy's, 9 & 11. We have

battled

> depression wondering what will happen to my husband and

children.

> We are both 41, I stay home to look after MIL. I want to do

it.

> Thank goodness we get home care 2 hours/ 5 days a week. We are

on

> list for long term care, but it is hard to loose another family

> member. Thanks for listening.

>

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

>

>

> -------------------------------------------------------------------

-----------

>

[Guest guest]

sandra,

my father is also starting with bowel incontinence. he has had it off/on for

the past 4 months but very bad the last one month, and the worst part of it, is

when he does it, he cant keep his hands out of it, and then like an infant keep

his hands away from his face and mouth. and if i catch him at it, he grins like

a spoiled kid and does it more. ewwww very aggravating.

i have lots of htose plastic bed pads but i have also have purchased the

washable bed pds and these are huge like 30 x 54 so i put that over the plastic

ones and drape it a little over the side of the bed, the fitted sheet is next

and then if we are having a very bad day i will take a flat sheet fold it in

half and use it like a draw sheet, tucking it in on both sides to keep the

plastic and washasble pads from shifting. this plan works well enough that i put

another set or even two sets on the bed. as a matter of fact, today he has 3

changes on his bed, each layer having plastic and washable pads, fitted and

drawer sheets as well. so when he messes i can take off teh top layer and only

once have i had to strip the entire bed. i hope this idea helps you!! hugs

sharon m

Date: 2005/04/17 Sun PM 07:09:38 EDT

To: LBDcaregivers

Subject: Re: Hi, I am a newcomer too.

Hi Kathleen &

I seem to have missed some posts, just wondering back through them

and found several I missed. I am so sorry to hear about your dad.

My MIL comes from Edinburgh, left when she was 19 on a ship to

Canada with a friend. Most impressive, independent thing to do.

From what my husband tells me, she always retreated when the going

got rough, and she drank too much. We both struggle daily when we

watch how far she has sank. Again through friday and saturday she

changed. We have homecare come in and the one that has been with us

the longest ( Maureen moved in Feb. 19 from rehab hospital) stayed

with her on saturday afternoon so I could take my oldest son to a

goal-keeper clinic for soccer. The care-giver said something was

going on with Maureen, acting differently again. Taking off

diaper. personality wise more combative. I noticed too. I asked

home care lady about possible UTI, she said I would notice strong

smell of urine, she has never noticed this, and I have not either.

What happens is the bowel incontinence first so she removes her

diaper and proceeds to pee in the bed. I did not know that bowels

would be a problem first. Live and learn. MIL also reacts to

changes behaviourly by more accidents. But every day now usually

twice a day I have to change her bed even with a secondary pad under

her. She throws that out to and pee's. I do not feel so noble

now. I get very down. I keep telling myself we need to protect

her. I also feel that when we get our house finished, we plan to

move in April 30, things will be easier to manage. When I say we

are building our house, it is literal. My husband is there day and

night when not at work. I go when home care is here. My sister has

been tremendous in helping us, she lives 45 minutes away. I also

want to wait to move Maureen to Long Term Care until after the

appointment with geriatric Dr. next month. I turn to all in the

group to help me get there. I need all of you for support. After

each clean up, I think, how will I ever get through this, then I say

She needs us. Thank you for your support all over the world. -

-- In LBDcaregivers , " Kathleen and McElroy "

<thebeeches@b...> wrote:

> Hi ,

>

> it's good you found the group, I only found this group a few

months ago and sadly my dad who had LBD died a couple of weeks ago,

so for me it was a bit late, but now I just hope I can help others

in some small way.

>

> You sound very swamped at the moment with all that you have on

your plate, first thing is to take a wee bit of time to catch your

breath and take time for YOU. I omitted to do this for 2 years and

had a mini breakdown.....still having counselling yet.

>

> Your mother in Law is VERY lucky to have you, firstly you stay

home and care for her, and now your trying to think of the best

options for her........pat yourself on the back that your doing your

best here, especially with raising a young family. I am 47 and have

no children, just my husband, and I found it absolutely totally

draining taking care of my dad and I had a sister share the load

50/50.

>

> Lewy Body Dementia as far as we know is not hereditary. We have

spoken many times with my dads Consultant Physco-Geriatrician, in

the UK where I live he is a leading light with LBD and gives talks &

symposiums around the world. Thus far there's no reason to suspect

it is hereditary........however I'm not sure about other forms of

Dementia.

>

> My dad was first of all diagnosed with Vascular Dementia which is

a series of tiny mini strokes (T.I.A. attacks) affecting the brain.

These are so small as to be un-noticeable sometimes, but each tiny

one does a small damage. However in year two he started to display

classic hallucinations, his balance was bad, he had extreme

paranoia, agitation, rigid posture, delusions.....everything that

fit LBD so he was re-diagnosed and put on different medications.

Firstly a diagnosis by a Physco-Geriatrician is important as these

guys really know their stuff and secondly getting the medications

right can also make a terrific difference.

>

> My dad too couldn't easily get into bed, we actually purchased a

remote controlled hospital bed for home to make things easier - and

boy it did..! He also lost weight in the face of high calorie

intake but he was very stiff & rigid which is apparently a

Parkinsonism in LBD and I believe the rigidty is quote " tremor that

is just too fine to see which burns calories like crazy " .....so that

will explain some wieght loss.

>

> My dads swallowing got gradually worse, he began 'aspirating' tiny

particles of food down into his lungs - causing constant chest

infection.

>

> We took care of my dad ourselves 24/7 for the first year. In the

second year we had home helpers who dealt with

showering/dressing/shaving and the like, and they came in the

evenings to undress, get night-clothes on and do a bed-time tuck-

in.....but sometimes my dad wouldn't let them do it and was

suspicious of people coming to his home late at night - the paranoia.

>

> At the end of year 2 things were breaking down badly at home,

crisis upon crisis, he developed a lot of physical probelms as a

result of LBD.....constipation to the point of impacted bowel, chest

& UT infections and had a few hospital stays. Also every now and

again the medications would just cease to work and he was admitted

to the Physcho-Geriatric short stay unit to have it all re-booted or

medication changed. By year 3 we were all breaking down under the

strain and had to look at permanent care. It was a harrowing time,

really really difficult, but finally we opted for a local hospital

unit that specialised in Dementia care, my dad stayed with the same

Consultant there, and he moved there from home with very little fuss

on his part - but absolute devastation on ours. I think the long

term care of a loved one is one of the hardest decisions we ever

make, it goes against our very instinct, but in LBD the illness

dictates the course and usually there is no other option, my dads

illness just got beyond what we could give him.

>

> Our long term care unit was wonderful, my dad settled well & had a

little room of his own with toilet etc. so he quickly settled and we

furnished it as if from home with his own bed, armchair, tv etc. We

continued to see him every day and in that respect he'd happily know

that we'd be around. He was a man who responded very well to any

kindness and his nursing team in that way were able to bring out the

best of him as they were so kind & considerate and they would joke

with him all the time.

>

> However it all came at a cost and as I said earlier this is when I

had the breakdown. Don't know if it was just guilt at him having to

go into care or just a collapse after a few tough years without let-

up......but anyway, as I said at the begining my dad died March 21st

and at the moment we are all still devastated at his loss.

>

> There seems to be no easy route through LBD and no right or wrong

decisions, everyone has to do what is right for THEIR loved one.

Try to find out all you can on LBD, keep a journal of your MIL's

progress & names of medications etc. and how they work with

her.....it's really handy to have it in writing at doctors

appointments and it also helps when your very tired and the mind

becomes fogged..!

>

> Your family have sure been through the mill.....two broken hips

before LBD with your MIL.....and sister in law & husband passing

away in the same month - quite unbelievable.

>

> Take a deep deep breath and try to get your head together before

going any further forward. See if you can't speed up the

appointment she is due in May for her good and for your own, and for

now just pat yourself on the back that your handling all this plus

raising your own family - my goodness - you deserve such respect!

>

> Hang on in there, I hope just talking helps some.

>

> Kathleen - Scotland.

>

>

> Hi, I am a newcomer too.

>

>

>

> Am I glad to find you. My Mother-in-law has yet to be formally

> diagnosed with anything other than dementia. After readind

about

> LBD, I believe she has it. Two and a half years ago, we noticed

odd

> behaviours and memory lapses. Did not know how to open

Christmas

> present or even what was going on. Continually asked what she

got.

> She lived alone in Oshawa, ON. Jan. 04 she broke left hip and

had

> it replaced. Stayed with sister-in-law for 2 months after

> discharge. We later found out that MIL had been experiencing

> hallucinations, yet moved back to own home. Hallucinations

became

> severe so Family Dr. put her on respirdal (early June)with

> appointment to see psychiatrist, Dec 10. My husband went to get

her

> (we live outside borough)for appt. to find that she broke

other

> hip day before. She has never been the same since. Before

first

> break, she was down to 89 lbs from 118. No explanation other

than

> not well because of malnutrition. Sister-in-law POA and primary

> caregiver. No control over situation for us. Sister-in-law

passed

> away Dec. 10, her husband Dec 18, unrelated. MIL declining

every

> few days. She is only 68 now. Wears depends for a month now.

> Toilets on own with accidents, sometimes constant trips to

> bathroom. Lays in bed all day and night. Comes to table to

eat,

> starting to have difficulty swallowing. Needs complete care,

can't

> shower, brushes teeth after I put toothpaste on, and I tell her

to

> do so. Very unsteady on feet now. Difficult to get into bed,

can't

> swing legs in. Could not walk without walker. Hunched over

> posture, stoney face. Shaky. Speaks (mostly to say " ya " ) only

when

> spoken to. Does not look directly at us unless furtively.

Probably

> sometimes wonders who we are. Hallucinations becoming worse.

Dr's

> advice is to keep upping respirdal. Is this increasing motor

skill

> decrease more rapidly? We feel alone without good medical

advice.

> She will be seeing a gerantologist in May, but the trip will

cause

> her to become worse and the decline is so quick, she needs help

now

> to sort out med's. I feel like I am rambling. My husband and I

are

> plowing through this terrible disease with the overshadowing of

> wondering if it can have a genetic link. His grandmother

> had " dementia " in the 70's, both aunts are going through the

same

> thing as his mother now. We have two boy's, 9 & 11. We have

battled

> depression wondering what will happen to my husband and

children.

> We are both 41, I stay home to look after MIL. I want to do

it.

> Thank goodness we get home care 2 hours/ 5 days a week. We are

on

> list for long term care, but it is hard to loose another family

> member. Thanks for listening.

>

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

>

>

> -------------------------------------------------------------------

-----------

>

[Guest guest]

i am glad that idea helps, it does wonders here, fortuantely dad has been better

at controlling his bowels but still i am ready for a anything now. lol hugs

sharon m

Date: 2005/04/19 Tue AM 07:26:36 EDT

To: LBDcaregivers

Subject: Re: Hi, I am a newcomer too.

Good Morning Sharon

Brilliant idea having layers on bed. I'll get homecare to do it for

me, one less thing for me to do. My problem here at my rental is

the septic system, hard to do more than 2 loads of laundry a day.

Two boy's and a husband in construction. I am tired to be

continually running and feel lazy to be going to laundromat. April

30th we move into our dream home and then I laundry will not be an

issue. The good news is that my MIL does not get hands into mess.

MIL had it sporadic too, then much more frequently. Thanks,

> > Hi ,

> >

> > it's good you found the group, I only found this group a few

> months ago and sadly my dad who had LBD died a couple of weeks

ago,

> so for me it was a bit late, but now I just hope I can help others

> in some small way.

> >

> > You sound very swamped at the moment with all that you have on

> your plate, first thing is to take a wee bit of time to catch your

> breath and take time for YOU. I omitted to do this for 2 years

and

> had a mini breakdown.....still having counselling yet.

> >

> > Your mother in Law is VERY lucky to have you, firstly you stay

> home and care for her, and now your trying to think of the best

> options for her........pat yourself on the back that your doing

your

> best here, especially with raising a young family. I am 47 and

have

> no children, just my husband, and I found it absolutely totally

> draining taking care of my dad and I had a sister share the load

> 50/50.

> >

> > Lewy Body Dementia as far as we know is not hereditary. We have

> spoken many times with my dads Consultant Physco-Geriatrician, in

> the UK where I live he is a leading light with LBD and gives talks

&

> symposiums around the world. Thus far there's no reason to

suspect

> it is hereditary........however I'm not sure about other forms of

> Dementia.

> >

> > My dad was first of all diagnosed with Vascular Dementia which

is

> a series of tiny mini strokes (T.I.A. attacks) affecting the

brain.

> These are so small as to be un-noticeable sometimes, but each tiny

> one does a small damage. However in year two he started to

display

> classic hallucinations, his balance was bad, he had extreme

> paranoia, agitation, rigid posture, delusions.....everything that

> fit LBD so he was re-diagnosed and put on different medications.

> Firstly a diagnosis by a Physco-Geriatrician is important as these

> guys really know their stuff and secondly getting the medications

> right can also make a terrific difference.

> >

> > My dad too couldn't easily get into bed, we actually purchased a

> remote controlled hospital bed for home to make things easier -

and

> boy it did..! He also lost weight in the face of high calorie

> intake but he was very stiff & rigid which is apparently a

> Parkinsonism in LBD and I believe the rigidty is quote " tremor

that

> is just too fine to see which burns calories like crazy " .....so

that

> will explain some wieght loss.

> >

> > My dads swallowing got gradually worse, he began 'aspirating'

tiny

> particles of food down into his lungs - causing constant chest

> infection.

> >

> > We took care of my dad ourselves 24/7 for the first year. In

the

> second year we had home helpers who dealt with

> showering/dressing/shaving and the like, and they came in the

> evenings to undress, get night-clothes on and do a bed-time tuck-

> in.....but sometimes my dad wouldn't let them do it and was

> suspicious of people coming to his home late at night - the

paranoia.

> >

> > At the end of year 2 things were breaking down badly at home,

> crisis upon crisis, he developed a lot of physical probelms as a

> result of LBD.....constipation to the point of impacted bowel,

chest

> & UT infections and had a few hospital stays. Also every now and

> again the medications would just cease to work and he was admitted

> to the Physcho-Geriatric short stay unit to have it all re-booted

or

> medication changed. By year 3 we were all breaking down under the

> strain and had to look at permanent care. It was a harrowing

time,

> really really difficult, but finally we opted for a local hospital

> unit that specialised in Dementia care, my dad stayed with the

same

> Consultant there, and he moved there from home with very little

fuss

> on his part - but absolute devastation on ours. I think the long

> term care of a loved one is one of the hardest decisions we ever

> make, it goes against our very instinct, but in LBD the illness

> dictates the course and usually there is no other option, my dads

> illness just got beyond what we could give him.

> >

> > Our long term care unit was wonderful, my dad settled well & had

a

> little room of his own with toilet etc. so he quickly settled and

we

> furnished it as if from home with his own bed, armchair, tv etc.

We

> continued to see him every day and in that respect he'd happily

know

> that we'd be around. He was a man who responded very well to any

> kindness and his nursing team in that way were able to bring out

the

> best of him as they were so kind & considerate and they would joke

> with him all the time.

> >

> > However it all came at a cost and as I said earlier this is when

I

> had the breakdown. Don't know if it was just guilt at him having

to

> go into care or just a collapse after a few tough years without

let-

> up......but anyway, as I said at the begining my dad died March

21st

> and at the moment we are all still devastated at his loss.

> >

> > There seems to be no easy route through LBD and no right or

wrong

> decisions, everyone has to do what is right for THEIR loved one.

> Try to find out all you can on LBD, keep a journal of your MIL's

> progress & names of medications etc. and how they work with

> her.....it's really handy to have it in writing at doctors

> appointments and it also helps when your very tired and the mind

> becomes fogged..!

> >

> > Your family have sure been through the mill.....two broken hips

> before LBD with your MIL.....and sister in law & husband passing

> away in the same month - quite unbelievable.

> >

> > Take a deep deep breath and try to get your head together before

> going any further forward. See if you can't speed up the

> appointment she is due in May for her good and for your own, and

for

> now just pat yourself on the back that your handling all this plus

> raising your own family - my goodness - you deserve such respect!

> >

> > Hang on in there, I hope just talking helps some.

> >

> > Kathleen - Scotland.

> >

> >

> > Hi, I am a newcomer too.

> >

> >

> >

> > Am I glad to find you. My Mother-in-law has yet to be

formally

> > diagnosed with anything other than dementia. After readind

> about

> > LBD, I believe she has it. Two and a half years ago, we

noticed

> odd

> > behaviours and memory lapses. Did not know how to open

> Christmas

> > present or even what was going on. Continually asked what she

> got.

> > She lived alone in Oshawa, ON. Jan. 04 she broke left hip and

> had

> > it replaced. Stayed with sister-in-law for 2 months after

> > discharge. We later found out that MIL had been experiencing

> > hallucinations, yet moved back to own home. Hallucinations

> became

> > severe so Family Dr. put her on respirdal (early June)with

> > appointment to see psychiatrist, Dec 10. My husband went to

get

> her

> > (we live outside borough)for appt. to find that she broke

> other

> > hip day before. She has never been the same since. Before

> first

> > break, she was down to 89 lbs from 118. No explanation other

> than

> > not well because of malnutrition. Sister-in-law POA and

primary

> > caregiver. No control over situation for us. Sister-in-law

> passed

> > away Dec. 10, her husband Dec 18, unrelated. MIL declining

> every

> > few days. She is only 68 now. Wears depends for a month now.

> > Toilets on own with accidents, sometimes constant trips to

> > bathroom. Lays in bed all day and night. Comes to table to

> eat,

> > starting to have difficulty swallowing. Needs complete care,

> can't

> > shower, brushes teeth after I put toothpaste on, and I tell

her

> to

> > do so. Very unsteady on feet now. Difficult to get into bed,

> can't

> > swing legs in. Could not walk without walker. Hunched over

> > posture, stoney face. Shaky. Speaks (mostly to say " ya " )

only

> when

> > spoken to. Does not look directly at us unless furtively.

> Probably

> > sometimes wonders who we are. Hallucinations becoming worse.

> Dr's

> > advice is to keep upping respirdal. Is this increasing motor

> skill

> > decrease more rapidly? We feel alone without good medical

> advice.

> > She will be seeing a gerantologist in May, but the trip will

> cause

> > her to become worse and the decline is so quick, she needs

help

> now

> > to sort out med's. I feel like I am rambling. My husband and

I

> are

> > plowing through this terrible disease with the overshadowing

of

> > wondering if it can have a genetic link. His grandmother

> > had " dementia " in the 70's, both aunts are going through the

> same

> > thing as his mother now. We have two boy's, 9 & 11. We have

> battled

> > depression wondering what will happen to my husband and

> children.

> > We are both 41, I stay home to look after MIL. I want to do

> it.

> > Thank goodness we get home care 2 hours/ 5 days a week. We

are

> on

> > list for long term care, but it is hard to loose another

family

> > member. Thanks for listening.

> >

> >

> >

> >

> >

> > Welcome to LBDcaregivers.

> >

> >

> >

> >

> >

> > -----------------------------------------------------------------

--

> -----------

> >